Showing posts with label Learning and Sharing. Show all posts
Showing posts with label Learning and Sharing. Show all posts

Tuesday, 18 December 2012

The Importance of Tradition: A Journal Entry



I love tradition.  I come from and am part of a family of traditions.  Growing up, holidays were always  a time of making the same yummy recipes, putting up the same Christmas tree, visiting the same people, telling the same funny stories, and putting up the same homemade Christmas stockings for Santa to fill.

Photo of Christmas tree with lights and gold and red decorations

As I grew older, I took with me many of these traditions and eventually introduced them to my own family.  One of my favourite tradition is decorating our Christmas tree.  Eight years ago, when we celebrated our first family Christmas together, we began the tradition of going to a local tree farm to buy our Christmas tree. 

Now remember, global warming had not affected the weather as much, so we had something called “snow.”  The tradition began at the house with the pulling on of big coats, boots, hats, mitts and snow pants.  You always hoped you didn't have to go to the washroom!  Our two dogs, Leo and Riley, also had a special outfit for the event.  Both dogs had their sweaters and Christmas bells put on them.  We laughed as they began their dance trying to get the bells off of their legs. 

We all piled into the van and the Christmas sing-song began.  The tree farm was fairly close so in no time we arrived to a very busy scene.  People, trees, dogs and snow.  What a wonderful, chaotic place!  We quickly filed out of the van and rushed to the opening of the farm.  This is where I would put Brianna into the sleigh we had brought and began to “mush.”  With the dogs prancing beside us, we began to inspect the many trees until finding the perfect one.  At a young age, I always encouraged Brianna to be independent.  With my assistance, she would lay down on the cold snow and begin to saw the tree trunk.  Down it would come with a collective “yeahhhh” from all of us.  We always liked to count the rings on the tree to know how old it was.  For some reason, this was important. 

The tree would then be moved onto the sled to be towed back to the point of entry so we could pay for it.  I always loved that walk back.  The cold, the snow falling softly, the sounds of the dogs bells, and the excited chatter of my family.  I felt at peace.

Once we arrived back, we would proceed into the small building to have hot apple cider.  How wonderful it tasted.  Brianna would then walk through the isles of Christmas decorations and pick out the one she would like to take home with her.  Every year, Brianna still picks out one Christmas ornament to adorn the tree.

The tree would then be strapped to the roof of the van, and we would all pile back into it and head for home.  From the roof, it would be moved into the garage for a day so it had time to fall. 

Once it is time to decorate the tree, family members take on specific roles.  Dawn, is the individual who hands out the tree ornaments to Brianna.  She also has the very important job of ensuring the tree is straight and if not, to coordinate the efforts to make it so.  For some reason, our tree always seems to have a bit of a tilt.  Brianna is the “hanger.”  It is her role to take the ornaments from Dawn and then find a special place on the tree for each and everyone.    Dawn usually helps out with instructions from the couch.  My role starts at the very beginning and goes to the end of the process.  It begins by taking out all of the boxes from storage and moving them into the family room.  Then, from the garage, I take the Christmas tree into the house and put it into the tree stand.  Next, I put a string of lights around the tree and make sure it looks even.  Then my girls join me and the decorating begins.

During the time in my life when I travelled around the world for work, I collected Christmas ornaments.  Over the years, I have accumulated some really beautiful and unique ornaments.  Our family tradition is for me to is take each of these ornaments, prior to the their positioning on the tree, and to provide the history of the ornament.  It comes with the where and when I obtained these special treasures.  Each year, bulbs from South Africa, Mexico, England, The Netherlands, Ireland, Texas and Bethlehem are dusted off and placed in their spot of honour. 

The other special bag that is brought out from its box is that containing Brianna's homemade ornaments.  We all laugh and smile as we pick up each ornament and Dawn reminisces of the stories behind the little gems.

The final, most important moment is shared with Brianna and myself.  It is the adorning of the tree with the Christmas angel.  When Brianna was little, I used to lift her up and she would place it on the top of the tree.  But, now that she is 18, I just stand beside her as she does her work.  And of course, a picture is taken of the yearly event. 

Today, the three of us enjoyed this special day of Christmas tree decorating.  Unfortunately, for the last three years we no longer venture to the tree farm but rather buy a pre-cut tree from a lot. 

Today's event was a bit different as we added a new element to it.  For the first time, we video taped it.  Without saying it, we sensed the importance of capturing this beautiful moment this year.  We are keenly aware that we do not know what Frontotemporal Dementia (FTD) will bring over the next year.  In fact this year, a few variations had to take place to work around FTD.  Brianna took over my role of ensuring that the tree was straight and properly secured.  My sense of frustration was high and I found it hard to tighten the tree holder bolts.  Also, there were fewer decorations on the tree this year.  It is so easy to be over stimulated that less is always better - even on the Christmas tree.

I must say a bit of a sense of relief has come to me.  No matter what life brings to me, I know  my stories of the Christmas ornaments will be passed down through generations.    The important tradition of the tree decorating will continue - no matter what. 

Wednesday, 7 November 2012

New website launches to assist those with dementia and their families


WATERLOO, Ont. (Wednesday, November 7, 2012) – A diagnosis of Alzheimer’s disease or a related dementia leaves both the person with the illness and their family members with many unanswered questions.  Researchers at the University of Waterloo and McMaster University are leading a project that has resulted in the creation of a new web-based resource that provides valuable information that will help navigate the journey of living with dementia.

Launching today, the Living with Dementia website (www.livingwithdementia.uwaterloo.ca) was designed to provide persons newly diagnosed with dementia and those who care for them with the information and resources needed to live well with an illness causing dementia. This new research-based website, available in both English and French, was created in collaboration with persons living with dementia and their family members and care providers.

“I would have been ecstatic to have walked away from my doctor’s office with this information; something that would allow me to be proactive and give me a sense of direction, instead of sitting in my car crying and feeling hopeless,” said Brenda Hounam, who was diagnosed with dementia 10 years ago. “This website is a lifeline. It is a place to get safe, hopeful information.”

The website covers a wide range of information with topics identified by those living with dementia, including answers to questions surrounding health care, how to continue living well with dementia, how to ensure they are receiving the right care and support to meet their needs, and how to begin the process of planning for the future. 

“Persons with dementia and their families can continue to live well and have meaningful lives when they have the information and resources available to support them in doing that.” said Sherry Dupuis, co-investigator and Director of the Murray Alzheimer Research and Education Program (MAREP) at the University of Waterloo. “What makes this resource unique is that it was developed specifically by persons with dementia and their care partners working actively with our extensive team of researchers, educators, health professionals, pharmacists, and family health team representatives. This ensures it is relevant and easily accessible to persons and families diagnosed with Alzheimer’s disease or another related dementia.”

Carrie McAiney, co-investigator, and associate professor in the Department of Psychiatry & Behavioural Neurosciences at McMaster University adds that this resource will be a valuable tool for professional health care providers and community organizations supporting those whose lives are touched by dementia.  "This project will help physicians, pharmacists, Alzheimer Societies and others find ways to integrate the Living With Dementia resource into their everyday practice so it can be shared with those living with dementia and their family members,” she said.

About MAREP

The Kenneth G. Murray Alzheimer Research and Education Program (MAREP) is a unit of the Schlegel-UW Research Institute of Aging. Based in the Faculty of Applied Health Sciences at the University of Waterloo, MAREP is an innovative program that adopts an authentic partnership approach and integrates research and educational activities in an effort to improve dementia care practices in Canada and beyond. Its goal is to enhance the ability of all involved in dementia care, including persons with dementia, their family partners in care, and professional care partners, to respond to the needs of persons with Alzheimer’s disease and related dementias and ultimately improve the quality of life of all those experiencing dementia. For more information about MAREP, visit www.marep.uwaterloo.ca.

About the University of Waterloo

In just half a century, the University of Waterloo, located at the heart of Canada's technology hub, has become one of Canada's leading comprehensive universities with 35,000 full- and part-time students in undergraduate and graduate programs. Waterloo, as home to the world's largest post-secondary co-operative education program, embraces its connections to the world and encourages enterprising partnerships in learning, research and discovery. In the next decade, the university is committed to building a better future for Canada and the world by championing innovation and collaboration to create solutions relevant to the needs of today and tomorrow. For more information about Waterloo, please visit www.uwaterloo.ca.

About McMaster University

McMaster University, one of four Canadian universities listed among the Top 100 universities in the world, is renowned for its innovation in both learning and discovery. It has a student population of 23,000, and more than 156,000 alumni in 140 countries.

For further information about MAREP and the Living with Dementia, contact:
Lisa Loiselle, Murray Alzheimer Research and Education Program (MAREP), 519-888-4567, ext. 35040 or loiselle@uwaterloo.ca

Media Contacts:

Pamela Smyth, University of Waterloo, 519-888-4777 or email: psmyth@uwaterloo.ca

Veronica McGuire, McMaster University Health Sciences, 905-525-9140, ext. 22169 or email: vmcguir@mcmaster.ca


Wednesday, 8 August 2012

People with dementia are not 'shadows' of their old self

MAREP has been advocating for years against harmful stereotypes that portray or describe persons with dementia as shadows of their old self. This article, written by a woman whose husband is living with dementia, speaks up about this issue:
http://blog.seattlepi.com/witnessingalzheimers/2012/03/09/he-was-never-a-shadow-to-me/

Naomi Feil Validation Method

This video clip is amazing! Naomi Feil, the developer of the 'Validation' method, demonstrates the abilities and personhood of people with dementia, particularly persons labelled as 'non-verbal'. We can all learn a lot about how to interact with others from this emotional and inspirational clip.






Thursday, 26 July 2012

One Thing.


What's one thing you never want to forget? That's the question posed in this thoughtful video. Responses range from "my name" to first dates, and it's a lovely insight into the moments that matter most.

Take a look and pass it on.

Monday, 16 July 2012

PiDC Alliance Newsletter.



Looking for some informative summer reading? Check out our newest Partnerships in Dementia Care (PiDC) Alliance newsletter, hot off the presses.

You can access by visiting our website, or by clicking here.

(Image via SheKnows)

Wednesday, 13 June 2012

Who Cares?


Filmmaker Chris Wynn (Forgetful Not Forgotten) is working on a powerful new series called Who Cares? A Webseries about the State of Alzheimer's Care.

The series will provide a look into the lives of people touched by Alzheimer's Disease and dementia.

The first episode, A Captured Life, features Dr. Cleaver Keenan whose wife was diagnosed with Alzheimer's Disease. In this short video, he shares his wife's journey that he has captured on film.

(Movie still via Vimeo)

Tuesday, 12 June 2012

Need to consider the language of dementia

Yesterday, CTV reported on the World Health Organization and Alzheimer's Disease International's report, "Dementia: A Public Health Priority". The article reaffirmed how the number of persons with dementia is rapidly increasing. While this increase may pose significant challenges to our current health care system, and our communities, I question the usage of language that describes dementia as a "ticking time bomb". The 'tragedy' language of dementia needs to be reflected upon, and in most cases, challenged. Persons with dementia, are just that, persons. They are not time bombs.

Read more: http://www.ctv.ca/CTVNews/Health/20120411/dementia-study-world-health-organization-120411/#ixzz1xan4f7JQ

Study: iPod helps persons with dementia

CBC News (New Brunswick) reported on research from the Atlantic Institute on Aging that is exploring "how using personalized music can help bring back memories and make emotional connections" (Para. 2). The article notes how three nursing homes in New Brunswick are piloting the usage of iPods as a "painless, drug-free way to reactivate the brains of people with Alzheimer's, dementia and other neurological conditions" (Para. 1). Researchers discovered that personalised music stimulates and reactivates the brain and can "be used to improve a wide range of neurological conditions, including dementia, depression, anxiety, strokes and Parkinson's" (Para. 4). Read more at:
http://www.cbc.ca/news/canada/new-brunswick/story/2012/05/11/nb-ipod-pilot-nursing-dementia.html

Wednesday, 6 June 2012

ADI Survey.

Hi everyone,
We would like to share this message on behalf of Alzheimer Disease International. Please participate in this survey about stigma and dementia, or pass it on to eligible participants:

As part of the development of the World Alzheimer Report 2012, to be launched on 21 September, ADI is conducting a survey of people with dementia and family or informal carers to find out their opinion and experience of stigma related to dementia. The survey is in English and Spanish. The intended audience is only people with dementia and family or informal carers. Professional carers and associations are not being asked to participate in this way.

There is not much time - the survey will only be available until 17 June 2012.

We need your assistance. Please help us spread the word about this survey by forwarding this email, posting to your websites and social networks.  We would like as much participation as possible.  We recognize the format of a web-based survey may not be the best and only way to collect this information.  However, due to limited resources, we are piloting this to see if it is possible.  If your organization is able, feel free to provide assistance to individuals who cannot complete an online survey due to low educational level, lack of access to a computer or cognitive symptoms that impair their ability to use the survey, but they still have capacity to answer the questions thoughtfully.

Below is the link to the ADI website where more information and a link to the survey can be found:

http://www.alz.co.uk/research/world-report-2012

This survey is also available in Spanish from:

Friday, 25 May 2012

Gather at the Gallery Exhibit on now

MAREP's Lisa Meschino is featured in an article in the Kitchener Record about the Alzheimer Society's Gather at the Gallery program and exhibit. 

Gather at the Gallery, a 10 week collaborative program run with local art galleries, museums and studios, provides an opportunity for persons with dementia and their care partners to "learn and talk about art, and experiment with different media, including pottery, glass, fusion, paining, collage and drawing" (para. 4).

The Waterloo Community Arts Centre/Button Factory on Regina Street South in Waterloo is featuring a special exhibition of the participants' art until May 31st.

Lisa Meschino is working with the Alzheimer Society of KW to research the impacts of this program. For more information on Lisa's work, click here for an article posted in MAREP's newsletter.

Tuesday, 22 May 2012

Mayor's Forum Age Friendly Waterloo

In November 2009, Mayor Halloran hosted Waterloo's first Age Friendly City forum. Since that time our community has worked together to ensure that the City of Waterloo becomes a place where all residents age safely, enjoy good health and participate fully in their community. On Thursday June 14th Mayor Halloran will be hosting the Age Friendly Waterloo Forum from 8:30-12:00pm at Luther Village on the Park. (Please see flyer below for details.)

Friday, 18 May 2012

The Longevity Revolution

I was just reading an e-newsletter sent by the International Federation on Ageing, which provided a link to a very interesting article in the 'the age'. The article features Alexandre Kalache, former World Health Organisation's Director of Ageing and reports on his forced retirement at the age of 62. He argues these types of policies are oppressive and do not represent today's increased life expectancy. Nor do these policies reflect, what is he calling, the new social construct. As stated in the article:

We are going to age differently. We are starting to see role-models who are active, demanding, who will want to work longer or will want more leisure or will want to take part in society and expect that people will listen to their voices. It's exciting because it's a new stage of human development … It's going to be a very vibrant transformational period that is going to have lasting influences.
In the article, Alexandre offers insights into what Australia, and other countries, can do to prepare for, and support, the longevity revolution. What a great term.

U of G Accessibility Conference

The University of Guelph is hosting an Accessibility Conference from Tuesday May 29-Wednesday May 30th. One of the sessions that stands out is the presentation by the Canadian Centre on Disability Studies that explores 'Livable and Inclusive Communities for Seniors with Disabilities and all Citizens: Model and Tools for Actions - Research & Teaching'. This topic is relevant to us at MAREP since we have been working with community partners on an Age Friendly Initiative (to view MAREP's age friendly communities website, click here). For a full conference program, and more information on this session, please click here.

Thursday, 17 May 2012

WW Dementia Network Education Day

There is still space available for you to register for the Education Day hosted by the Waterloo Wellington Dementia Network where Dr. Sherry Dupuis, Director of MAREP, is presenting.

Topic 1: Rethinking the Language of Dementia (What we say and how we say it matters)
Dr. Sherry Dupuis PhD., MAREP Director, University of Waterloo discusses how words shape our thinking and impact the care we provide.

Topic 2: Compassion Fatigue (Finding your balance)
Sandra Parkinson and Laura McShane, Community Educators from The Canadian Mental Health Association, discuss how we in caring professions often struggle with how to refuel our emotional wellness while giving of ourselves daily.

Location: St. George’s Hall in Waterloo, 665 King St. North, Waterloo
Date: Friday, June22nd
Time: 8:30 – 3:30 (registration at 8:00)
Cost: $50.00 (includes refreshments, lunch, compassion Fatigue Workbook and Handouts)
Register:online at www.alzheimerkw.com or Call 519-742-1422



Join the Fireside Chat!

On June 19th from 12-1pm, we will be leading a fireside chat (i.e. a web-based seminar put on by the Alzheimer Knowledge Exchange) about the PiDC Alliance. The PiDC Alliance is a collaborative research network and research initiative focused on improving the dementia care experience for persons with dementia, family members, and staff in long-term care and community-based care. The session will highlight key findings from the project and offer tools and resources to those seeking to embark on their own culture change initiative. To join the session, follow the directions below. For more information on the PiDC Alliance, visit the website at www.pidc.uwaterloo.ca

Login information for live event
1. From your telephone: dial the teleconference line: 1-855-450-7670 enter pass code: 2371438
2. To log in to the web conference, go to: http://ake.adobeconnect.com/join
3. In the Adobe Connect login screen, use the first login option to login as a GUEST:
  • Enter the session by selecting the 'Guest' option
  • Enter your First and Last Name
  • Click 'Enter Room'- you should be in!
Note:
  • Log in at least 10 minutes before the session.
  • If the link does not work directly from this document, please copy and paste it into your web browser address bar
  • If your computer SPEAKERS are on please turn it OFF or MUTE the volume to prevent feedback

Thursday, 3 May 2012

Mayor’s Age Friendly Forum

The City of Waterloo has been named a member of the World Health Organization’s (WHO) Global Network of Age-friendly Cities for its commitment to assessing and improving its age-friendliness. Join us on June 14th, 8:30-12:00 at the Sunshine Centre in Luther Village where the City of Waterloo will be sharing information about this designation. An agenda with a timeline for the day will be posted soon.

Friday, 27 April 2012

Cambridge AFC Launch and Learn

Jessica Luh, MAREP’s Associate Director of Research, participated in Cambridge's age friendly community launch and learn hosted by the Social Planning Council of Cambridge and North Dumfries. Dr. Heckman and Mr. Liu from Yee Hong were guest speakers along with a representative from Abbeyfield Home.

Jessica was particularly interested to hear Dr. Heckman's perspective as to what he thought were some of the challenges of an integrated health care system in our LHIN. He emphasized the success of Linda Lee's memory care clinic model and the importance of education and support services for persons with dementia and their partners in care. Mr. Liu talked about Yee Hong’s model of care as well as their mission, philosophy and the services they offer. It was clear from the presentation that Yee Hong is really striving to move from traditional models of care towards the social model of living.

Yee Hong has created a DVD called "Breaking the myths about dementia" and offers numerous programs and services that support persons living in their homes and in the community. Jessica found Abbeyfield's housing model to be very interesting. Jessica will apply this knowledge to her work with the Dementia and Design committee.

Friday, 20 April 2012

Public Lecture with Dr. Stephen Post

Jessica Luh, MAREP's Associate Director of Research, listened to and met Dr. Stephen Post last night at a free public lecture put on by the Alzheimer Society of Hamilton and Halton in partnership with the Cilbrea Centre for Studies in Aging, McMaster University. The theme of his lecture was 'hope and continuing self identity: finding meaning in the care of those with memory loss'.

Dr. Stephen Post is a professor of preventive medicine at Stony Brook University and the author of two bestselling books, "the Moral Challenge of Alzheimer Disease" and "The Hidden Gifts of Helping".

Dr. Post's perspective is very much aligned with MAREP's as he openly discussed the importance of "accepting, affirming, connecting, and respecting" and how a person's personhood is still ever present even in the later stages of the illness.

Thursday, 15 March 2012

Re-Defining Responsive Behaviours

Here at MAREP, our learnings surrounding dementia research and care continue to evolve. We recently posted a revised definition of Responsive Behaviours on our website.

This re-definition of Responsive Behaviours (RB) was created in response to the need for a clearer, more easily applied conceptualization of RB that encourages compassion and understanding in all care contexts.

Want to share this definition with others? Use this downloadable PDF version.

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Responsive Behaviour

 

Definition and Philosophy:


Responsive Behaviours (RB) is a term originating from, and preferred by, persons with dementia that represents how their actions, words and gestures are a response, often intentional, to something important to them. Persons may use words, gestures, or actions to express something important about their personal, social, or physical environment. Responsive Behaviours adhere to the following principles:

1. All personal expressions (words, gestures, actions) have meaning.

2. Personal expressions are an important means of communicating meanings, needs, concerns.

3. Care partners require a multidimensional lens that seeks understanding of others’ expressions.

A Responsive Behaviours Philosophy requires:
  • a focus on understanding the meaning of personal expressions (words, gestures, actions)
  • understanding the layered nature of personal expressions – including at the individual/personal level (subjective experience of the physical body, cognition, emotional experiences, spirituality, and cultural beliefs), the experience of the social environmental (the nature of caring and interpersonal relationships and broader cultural issues such as organisational policies and practices), and the experience of the broader physical environment (built environment, temperature, lighting)
  • developing skills in active listening, being truly present, and using alternative ways to communicate
  • being open, non-judgemental, and compassionate

Rather than the current focus on pathology/disease as the root cause of all actions, words or gestures, a multi-dimensional lens/approach assists partners in care in developing a broader and more comprehensive understanding of the person with dementia and his/her subjective experiences, the meanings of personal expressions (i.e., what the personal expressions are communicating), and how best to offer compassionate support (caring styles and approaches).
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